Building public engagement and access to palliative care and advance care planning: a qualitative study.

BACKGROUND: Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required. METHODS: Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted (n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement. RESULTS: Three themes were generated from the data: "Visibility and relatability"; "Embedding opportunities for engagement into everyday life"; "Societal and cultural barriers to open discussion". Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement. CONCLUSIONS: Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

Bereavement and Grief Among Employees in an Arab University Setting: A Cross-Sectional Study.

BACKGROUND: Several mental health outcomes develop following bereavement. Little research has examined bereavement in the workplace and the associated risk factors, particularly in Arab populations. OBJECTIVES: The objectives of this cross-sectional study were to determine the sociodemographic characteristics of bereaved employees, measure the prevalence of their dysfunction, establish the type of closeness and conflict in their relationship with the deceased, determine the available resources to the bereaved, and determine the proportion of bereaved employees who needed help. METHODS: A study was conducted on Arabian Gulf University employees (91) in Bahrain. The revised Two Track Bereavement Questionnaire (TTBQ3-CG11) was utilized to assess bereavement outcomes. RESULTS: The response rate of the study was 28%. The composition of the study population was as follows: 51.6% males, 37.4% in the age range of 40-49 years, 86.8% married, 39.6% Bahraini, and 51.6% academicians. Over half of the participants had biopsychosocial dysfunction, 35.2% had active relational grief and trauma (ARGT), 36.3% had a conflict with the deceased, and half were close to the deceased. Total TTBQ3-CG11 scores showed that 28.6% of the bereaved had a low score (14-22), 61.5% medium (23-28), and 9.9% high (29 or more), with more females than males in the high category. The majority reported receiving adequate support from the administration and colleagues following their loss. CONCLUSION: There is a need to establish bereavement policies and procedures at tertiary educational institutes. This study may inform future policies to advance bereavement services in the educational institutions of the region.

The Evolving Complexities of MAID Care in Canada From a Nursing Perspective.

Medical Assistance in Dying (MAID) legislation has evolved rapidly in Canada with significant impacts on nursing practice. The purpose of this paper is to describe evolving complexities in legislative context and practice standards that influence the experiences nurse practitioners and registered nurses have with MAID. Qualitative interviews were conducted with 25 registered nurses and 10 nurse practitioners from diverse contexts across Canada. Participants described their practices and considerations when discussing MAID as part of advance care planning; their use of, and challenges with, waivers of consent; their practice considerations in negotiating the complexities of clients for whom death is not reasonably foreseeable; and their moral wrestling with the inclusion of MAID for persons whose sole underlying medical condition is mental illness. Findings illustrate the moral complexities inherent in the evolving legislation and the importance of robust health and social care systems to the legal and ethical implementation of MAID in Canada.

Challenges and Coping Strategies of Older Adults in the Aftermath of Kahramanmaras Earthquake in Türkiye: A Qualitative Research.

The aim of this study was to explore the post-earthquake experiences, difficulties, and coping strategies of older adults who experienced the Kahramanmaras earthquakes that occurred in Türkiye in 2023. This research was designed as a qualitative descriptive study. The study was conducted with 21 (13 female and 8 male) older adults and the mean age of the participants was 70.2 (in the range of 65-85). In line with the data obtained from the participants, "Fulfilling Basic Needs of Older Adults, Emotional Turmoil in Later Life, Healthcare Disparities in Aging, Adaptive Response of Older Adults" themes and sub-themes related to the theme were formed. Both physical and socio-emotional challenges, as well as coping strategies and support systems that older adults face in the aftermath of earthquakes, demonstrate unique characteristics for this demographic group. Therefore, it is recommended to plan programs by considering these differences while planning intervention programs before, during, and after the disaster.

Understanding Suicide from an Indigenous Cultural Lens: Insights from Elders in Canada.

In this study, Indigenous Elders in Canada were interviewed to explore their conceptualizations of death and dying, particularly in relation to suicide. Through reflexive thematic analysis, three key themes were developed: Indigenous conceptions of death and dying, Christian influences on views of suicide, and indirect suicide. The theme of Indigenous conceptualizations of death and dying included the subthemes of spirituality and life after death, highlighting the importance of spiritual beliefs in Indigenous culture and knowledge systems. The impact of Christian influences on views of suicide was also explored, with participants discussing the complex nature of the relationship between Christianity and Indigenous peoples. Finally, the theme of indirect suicide was analyzed, referring to deaths resulting from behaviors that do not necessarily fit within the conventional definition of suicide. Overall, this study highlights the importance of honoring Indigenous cultural knowledge in research related to suicide prevention in Indigenous communities.

"They choke to death in front of your very eyes": nurses' lived experiences and perspectives on end-of-life care during COVID-19.

BACKGROUND: The COVID-19 pandemic led to an intensified fear and threat of dying, combined with dying and grieving in isolation, in turn significantly impacting nursing in end-of-life situations. The study aims (1) to understand the lived experiences of nurses who provided care to end-of-life patients during COVID-19; and (2) to explore whether providing care under such circumstances altered the perspectives of these nurses regarding end-of-life care. METHODS: Applying the phenomenological-interpretive qualitative approach, 34 in-depth semi-structured interviews were conducted between March 2020-May 2021 with nurses from eight hospitals in Israel who were recruited through purposive and snowball sampling. Thematic analysis was applied to identify major themes from the interviews. RESULTS: Five main themes emerged from the analysis, including: (1) a different death; (2) difficulties in caring for the body after death; (3) the need for family at end-of-life; (4) weaker enforcement of advance care directives; and (5) prolonging the dying process. DISCUSSION: During the pandemic, nurses encountered numerous cases of death and dying, while facing ethical and professional issues regarding end-of-life care. They were required to administer more aggressive care than usual and even necessary, leading to their increased moral distress. The nurses' ethical concerns were also triggered by the requirement to wrap the corpse in black garbage-like bags to prevent contagion, which they felt was abusing the dead. The findings also demonstrate how family presence at end-of-life is important for the nursing staff as well as the patient. Finally, end-of-life situations during the pandemic in Israel were managed in an individual and personal manner, rather than as a collective mission, as seen in other countries. CONCLUSIONS: The study offers insights into the nurses' attitudes towards death, dying, and end-of-life care. An emphasis should be placed on the key elements that emerged in this study, to assist nurses in overcoming these difficulties during and after medical crises, to enhance end-of-life care and professionalism and decrease burnout.

Navigating tensions when life-sustaining treatment is withdrawn: A thematic synthesis of nurses' and physicians' experiences.

AIM: To synthesise nurses' and physicians' experiences with withdrawing life-sustaining treatment in an intensive care unit. DESIGN: The chosen methodology is thematic synthesis. The Preferred Reporting Items for Systematic Review and Meta-Analyses and Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement. METHODS AND DATA SOURCES: A systematic search is conducted in APA PsycINFO, CINAHL Plus, EMBASE, PubMed and Web of Science following the inclusion and exclusion criteria in April 2023. Two reviewers independently screened and extracted the qualitative data. Subsequently, data analysis was conducted using thematic analysis of qualitative research. This study was not registered with any review registry due to the irrelevance of the data to health-related outcomes. RESULTS: From the 16 articles, 267 quotes were extracted and analysed. The findings of the study revealed five analytical themes: (1) tensions between interdependent collaboration and hierarchical roles; (2) tensions between dignified dying or therapeutic perspectives; (3) family members' reflections of patient's wishes; (4) tensions in family members' positions; and (5) double-sidedness of distress. CONCLUSION: This study contributes to nursing knowledge by providing a more nuanced understanding of this complex phenomenon of withdrawing life-sustaining treatment. The findings of this study have revealed significant variations globally in the practices surrounding the withdrawal of life-sustaining treatment in intensive care units, emphasising the need for further research to inform clinical practices that cater to diverse contexts. REPORTING METHOD: Enhancing Transparency are used in Reporting the Synthesis of Qualitative Research Statement (ENTREQ statement). PATIENT OR PUBLIC CONTRIBUTION: Since this study reported a potential collision between the patient's dignified dying and the family member's perceptions and interests, the family member's wishes should be carefully distinguished from the patient's quality of end of life in practice.

Choreographing a good death: Carers' experiences and practices of enacting assisted dying.

The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico-legal landscape of end-of-life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under-theorised in research. In this article, drawing on semi-structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a 'good death' for the dying person. We find that desires to fulfil the dying person's wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly-staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers' experiences and how they navigate this new end-of-life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers.

Talking about death and dying: Findings from deliberative discussion groups with members of the public.

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying.

Psychosocial intervention in palliative care: What do psychologists need to know.

Emotional and existential suffering is prevalent in advanced diseases and psychologists have valuable skills to support people in this time of life. Yet, psychologists are rarely integrated in palliative care and relevant training is sparse. Being integrated in other areas of health, it is likely that we will be supporting these patients, whether integrated in a specialized team or not. This article is meant to serve psychologists, already skilled in the art and science of psychosocial intervention, who may find themselves supporting patients with advanced disease. Relevant history of palliative care is provided to elucidate palliative philosophy and approach. Evidence-based existential interventions will be reviewed. Integration of psychological models and both palliative theory and practice is provided to support palliative-appropriate case conceptualizations. Finally, case examples are provided throughout to help readers reconcile their existing practice in this domain of care.

Impact of nurse-led education on the prognosis of heart failure patients: A systematic review and meta-analysis.

AIM: To perform a meta-analysis of randomized controlled trials to investigate the effect of nurse-led education on death, readmission, and quality of life in patients with heart failure. BACKGROUND: The evidence of the effectiveness of nurse-led education in heart failure patients from randomized controlled trials is limited, and the results are inconsistent. Therefore, the impact of nurse-led education remains poorly understood, and more rigorous studies are needed. INTRODUCTION: Heart failure is a syndrome associated with high morbidity, mortality, and hospital readmission. Authorities advocate nurse-led education to raise awareness of disease progression and treatment planning, as this could improve patients' prognosis. METHODS: PubMed, Embase, and the Cochrane Library were searched up to May 2022 to retrieve relevant studies. The primary outcomes were readmission rate (all-cause or HF-related) and all-cause mortality. The secondary outcome was quality of life, evaluated by the Minnesota Living with Heart Failure Questionnaire (MLHFQ), EuroQol-5D (EQ-5D), and visual analog scale for quality of life. RESULTS: Although there was no significant association between the nursing intervention and all-cause readmissions [RR (95% CI) = 0.91 (0.79, 1.06), P = 0.231], the nursing intervention decreased HF-related readmission by 25% [RR (95% CI) = 0.75 (0.58, 0.99), P = 0.039]. The e nursing intervention reduced all-cause readmission or mortality as a composite endpoint by 13% [RR (95% CI) = 0.87 (0.76, 0.99), P = 0.029]. In the subgroup analysis, we found that home nursing visits reduced HF-related readmissions [RR (95% CI) = 0.56 (0.37, 0.84), P = 0.005]. In addition, the nursing intervention improved the quality of life in MLHFQ and EQ-5D [standardized mean differences (SMD) (95% CI) = 3.38 (1.10, 5.66), 7.12 (2.54, 11.71), respectively]. DISCUSSION: The outcome variation between studies may be due to reporting methods, comorbidities, and medication management education. Patient outcomes and quality of life may also vary between different educational approaches. Limitations of this meta-analysis stem from the incomplete reporting of information from the original studies, the small sample size, and the inclusion of English language literature only. CONCLUSION: Nurse-led education programs significantly impact HF-related readmission rates, all-cause readmission, and mortality rates in patients with HF. IMPLICATIONS FOR NURSING PRACTICE AND NURSING POLICIES: The results suggest stakeholders should allocate resources to develop nurse-led education programs for HF patients.

First death experiences of newly graduated nurses: A qualitative phenomenological study.

Newly graduated nurses typically face death for the first time during the transition to their professional careers. This encounter can cause nurses to experience compelling emotions and make it difficult for them to manage and cope with the process of adaptation to the profession and the death process of the patient. This study aims to retrospectively examine and reveal the first death experiences of newly graduated nurses (N = 15) using a retrospective phenomenological method. Analysis of the responses of the newly graduated nurses revealed three themes: first encounter with death, nothing is like before, and support need. Newly graduated nurses realized that their first death experiences change their perspectives on life and profession and that nursing touches human life.

"It was the first time someone had died before my eyes ": A qualitative study on the first death experiences of nursing students.

BACKGROUND: Accompanying a person at their death is a common experience in nurse education. In addition to all death experiences that are a meaningful part of the nursing profession, the first death experience is very important. However, there is limited understanding of nursing students' first death experiences. OBJECTIVES: This study aimed to explore nursing students' experiences of the death of a person for the first time during clinical practice. DESIGN: This study was conducted as a qualitative study using a phenomenological design. PARTICIPANTS: A total of 17 nursing students participated in this study. METHODS: Data were collected through online individual in-depth interviews and were analyzed using content analysis. RESULTS: Four main themes and eleven sub-themes emerged. The themes were meaning of death (first death, a part of life), process management (death information, physical environment, bad news), after death (empty bed, questioning, death with dignity) and education (curriculum, support, professional perception). CONCLUSIONS: While the first experience of death provides an opportunity for students to learn, this experience reveals various negative emotions and the need for support.

A Mindset for Communication for End of Life Care.

This communication model attempts to reconcile the unknowingness of death, with a deeper inner knowingness that supports End of Life patients in an empowered way, through a mindset that models both oneness and presence with the death and dying experience. Through 23 years of experienced EOL care, I feel it seems necessary to rethink the very one-dimensional idea of dying and to create a space for a multidimensional experience. This model of communication and perspective-taking, offers my patients an opportunity for a secure connection to their own inner resources of knowing how to die. As our bodies are each equipped in our own unique way to do it perfectly, as the return of self, from the experience of being. This communication model also includes perspectives and narratives that attempt to make communication and care in the EOL experience more effortless and intuitive for the provider. Further, the model explains and illustrates why perspectives matter, as they impact connection in the relationship of the provider to the patient and includes a multidimensional perspective to question our own perceptions of death as providers. This model also includes the theory of balance and harmony. As it relates to the relativity of the experience of self, through the connection of communication and perspectives, as the exchange of information that occurs in the relationship between providers and patients. This information as a model represents a new awareness approach in the field of EOL care. It's based on 23 years of EOL experience and is supported through research and a fundamental theory of our reality, which intuitively and logically approaches relativity in our human connection to our patients as providers.

An Exploration of Green Burial in the Natural Death Care Movement.

An exploration of the Natural Death Care Movement's economic and eco-friendly mediums of green burial and how the movement is revolutionizing an ecological, sociocultural, and spiritual connection in our inevitable passage toward organic death and decay.

Hospital-presenting self-harm among older adults living in Ireland: a 13-year trend analysis from the National Self-Harm Registry Ireland.

OBJECTIVES: To examine trends in rates of self-harm among emergency department (ED) presenting older adults in Ireland over a 13-year period. DESIGN: Population-based study using data from the National Self-Harm Registry Ireland. SETTING: National hospital EDs. PARTICIPANTS: Older adults aged 60 years and over presenting with self-harm to hospital EDs in Ireland between January 1, 2007 and December 31, 2019. MEASUREMENTS: ED self-harm presentations. RESULTS: Between 2007 and 2019, there were 6931 presentations of self-harm in older adults. The average annual self-harm rate was 57.8 per 100,000 among older adults aged 60 years and over. Female rates were 1.1 times higher compared to their male counterparts (61.4 vs 53.9 per 100,000). Throughout the study time frame, females aged 60-69 years had the highest rates (88.1 per 100,000), while females aged 80 years and over had the lowest rates (18.7 per 100,000). Intentional drug overdose was the most commonly used method (75.5%), and alcohol was involved in 30.3% of presentations. Between the austerity and recession years (2007-2012), self-harm presentations were 7% higher compared to 2013-2019 (incidence rate ratio (IRR): 1.07 95% CI 1.02-1.13, p = 0.01). CONCLUSIONS: Findings indicate that self-harm in older adults remains a concern with approximately 533 presentations per year in Ireland. While in younger age groups, females report higher rates of self-harm, this gender difference was reversed in the oldest age group (80 years and over), with higher rates of self-harm among males. Austerity/recession years (2007-2012) had significantly higher rates of self-harm compared to subsequent years.

Death education for undergraduate nursing students in the China Midwest region: An exploratory analysis.

AIM: The purpose of this study was to comprehend the need for incorporating death education within the curriculum of undergraduate nursing students and to assess the factors that impact the desire for such education. DESIGN: We enlisted undergraduate nursing students from several nursing colleges located in the central and west region of China. Undergraduate students who fulfilled the eligibility criteria between January and February 2021 were chosen to participate. Data were collected via an online platform called Questionnaire Star. The survey encompassed a general information questionnaire and a scale for assessing the need for education on the topic of death. Descriptive statistical analysis was performed using the SPSS 20.0 software, while multivariate stepwise regression was employed for more complex analysis. Statistical significance was indicated when the p-value was below 0.05, and high statistical significance was noted when the p-value fell below 0.01. METHODS: We designed a descriptive quantitative approach to investigate the need for death education and its associated factors. The research involved 907 undergraduate nursing students from the central and west region of China. The data collection was done through the Questionnaire Star platform. RESULTS: Following the collection of completed surveys, individuals displaying contradictory responses were omitted. Out of 911 surveys disseminated, 907 were successfully collected, resulting in a recovery rate of 99.6%. Among the participants, 769 identified as female, constituting 84.8% of the total, while 138 identified as male, making up 15.2%. The survey findings indicated that factors such as residency, parental educational history and exposure to hospice care education significantly impacted the need for death education among undergraduate nurses (p < 0.05). CONCLUSIONS: Among students pursuing a nursing degree at the undergraduate level, there was a pronounced need for education related to the topic of death. Offering such education to these students is essential, as it helps cultivate a proper understanding of death. This, in turn, contributes to enhancing the overall quality of patient care throughout their life journey. PATIENT OR PUBLIC CONTRIBUTION: A total of 907 nursing undergraduates from central and western China participated in the questionnaire.

Fear of dying dirty: Intimate care encounters during COVID-19 pandemic in South African context.

Background: Physical distancing, personal protective equipment (PPE) and hand hygiene were encouraged during the pandemic of COVID-19. However, personal hygiene procedures for patients admitted to hospitals, such as assisted baths, oral care and elimination, were neglected. Aim: This study aimed to describe intimate care and touch experiences for patients admitted to the hospital during the COVID-19 pandemic lockdown. Setting: This study was conducted in the medical and surgical units of two hospitals in Gauteng province. Methods: A generic qualitative approach was used to explore and describe the patients' intimate care and touch experiences during the COVID-19 hard lockdown. In-patient individuals above 18 years were purposively sampled. Twelve patients aged between 28 and 60 years participated in semi-structured interviews. Data were analysed using thematic analysis. Results: Three central themes emerged from the data: (1) Keeping away from the body, (2) Who is touching my body? and (3) Fear of dying dirty - a sense of losing bodily dignity. The participants felt that the nurses were trying to avoid them, as they were seen as potential carriers of the COVID-19 pandemic. Conclusion: The cleanliness of a patient's body gives them a sense of self-respect and dignity. Nurses should find ways to ensure that patients receive quality intimate care and touch, even during situations such as the pandemic. Contribution: Patients' religious or cultural beliefs and anxieties about dying dirty should be acknowledged and respected in nursing care to provide quality bodily care for all patients.

Encouraging death communication in a death-avoidant society: analysis of interviews with death café organizers.

BACKGROUND: Post-war Japanese tend to avoid discussion of death, resulting in a lack of death communication within clinical settings. However, with the aging of society, the significance of conversations and decisions related to end-of-life issues has grown. In 2007, the government established guidelines for decision-making in end-of-life care. Nonetheless, death communication remains a challenge for healthcare professionals in clinical settings. In contrast, death cafés have spontaneously emerged within communities as informal gatherings to openly discuss and explore death. Learning from death café organizers may help healthcare professionals encourage death communication in a death-avoidant society. Therefore, a qualitative study was conducted to describe death cafés by examining the underlying motivation and practices through interviews with death café organizers. METHODS: Individual in-depth interviews were conducted with death café organizers. Two key aspects were explored: 1) the underlying motivations of organizers; and 2) the practices and challenges encountered in running death cafés. The interviews were transcribed verbatim and analyzed using a qualitative descriptive approach. Thematic analysis was used. RESULTS: The study identified two themes representing the underlying motivation of death café organizers: individually-oriented and community-oriented. These themes exhibited contrasting orientations and were collectively termed "individual-community orientation". Regarding the practice of death cafés, the focus was on the "attitude towards having attendees with and without grief in the same session." Participants' attitudes towards this aspect fell into two categories with opposing orientations: "purification" and "inclusion." The "purification-inclusion orientation" was more prevalent among organizers who initiated death cafés due to their personal experiences. A matrix was created to categorize death cafés based on their underlying motivations (individual vs. community-oriented) and practices (purification vs. inclusion). This classification resulted in quadrant 1 (community-oriented, inclusive) and quadrant 3 (individually-oriented, purification). Notably, death cafés in quadrant 1 were often held in temples. CONCLUSIONS: Japanese death cafés can be classified into two categories: individually and purification-oriented and community and inclusive-oriented categories. Healthcare professionals can learn valuable insights from death café organizers, particularly in promoting death communication. Specifically, temple death cafés, with their inclusive practices and orientation towards community, can be particularly beneficial in fostering inclusivity and community engagement.